The “Claire Jacket”; A Collaboration of Love to Benefit CMF

 

For anyone who knew Claire, it was well understood fashion was not a choice but an essential way of life. She would spend days sketching designs from casual to evening gowns.  She dove in headfirst into her school’s newly launched green fashion show (now held in her honor every February) to design dresses out of recycled materials such as newspapers, candy wrappers and Lilly Pulitzer shopping bags. Her friend Mary was always snagged as her favorite model!

She shadowed handbag designer Danielle Nicole in New York and attended a summer design seminar at Savannah College of Arts and Design. She happily styled friends for special occasions, either from her “collection” in her bedroom or stashed in the trunk of her little white Rav 4.  She adored the classics of Audrey Hepburn and Coco Chanel, adopting the attitude it took as long to pop-on something cute as it did to wear a pair of sweats. Claire believed by surrounding yourself in color, texture and creativity,  in your home or wardrobe,  any day could be made better and happier.  In short; we all can joy and adventure in the smallest of things. 

With that, perhaps you can understand why we were thrilled when Baltimore couture designer  Ella Pritsker offered to create a denim jacket to mark Claire’s 10th Angelversary!  We connected Ella with Claire’s friend, artist Katherine Boggs to create a special design, representing Claire’s joyful spirit. Katherine’s artistic inspirational vision with Ella’s exquisite design! It’s exactly what Claire would have loved and so exciting they came up with two separate jackets; the “Claire” with a distressed coral seashell and the “Claire Coral” with a watercolor rendition of a sunset.

Both are on  a classic, distressed, fitted denim jacket; unique in style with customized cuffs and collar.  Perfect for any mood or occasion!  Additionally, a portion of the proceeds will go to benefit the melanoma prevention programs of the Claire Marie Foundation! Yayyy! Celebrate Claire with us! To order your jacket today at http://www.ellapritsker.com Don’t forget to use promo code CLAIRE30 at checkout for 30% savings 

Cheers to many happy adventures in your Claire jacket!  #livelifelikeclaire

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Love, Laughter and Claire; Memories on her 10th Angelversary

How can it be? Ten years without our Claire and yet, she is as close as a smile and those ever present coral sunsets that seem to pop up when we need them the most.  As much as Claire refused to be defined by melanoma in her life, it seems more important than ever to celebrate the young woman beyond the diagnosis. While we know she would embrace the mission of this foundation bearing her name, Claire was so much more; a unique spirit determined to live life to the fullest. She was extremely private, offering quiet strength wrapped in joy with high expectations  for the future, always undeterred.

How do I share all the magic that was Claire? It’s nearly impossible. 

Claire was simply someone you had to experience; the brightest of lights.  Hysterical with a dry wit and contagious belly laugh, she loved nothing more than to make fun of herself. Her years were short but her life was full. By 17, she parasailed, traveled through Europe and determined Charleston was her happy place. She shadowed a designer in New York and was accepted to  two of her favorite colleges the day before she passed. She knew all the best shopping areas in SoHo, enjoyed celebrity moments, danced in the rain at concerts. She broke curfew, was grounded, redeemed, and grounded again. She fell in love, played lacrosse, field hockey and cross country and competed in aerobics. She designed amazing dresses, had parties (and invited way too many people…she just couldn’t say no apparently). She challenged herself, had little patience for drama, and decided there was always something to smile about if you looked hard enough. She embraced all that was beautiful, intent on bringing joy, color, beauty and creativity to everyday life.

Posted in her room was a sign stating “ I have an irrational fear of wasting a good outfit on an insignificant day.”  Since she wasn’t about to give up looking good, Claire opted to avoid insignificant or mediocre days. 

At her passing, her classmates and friends shared with us stories of Claire. It was a “fly on the wall” view of our daughter;  the life she lived away from us. Ten years later, we have asked some of those closest to her to share their favorite memories and reflections. Hearing the stories creates a lovely image, impossible of course, but one which still makes this mother smile. If I close my eyes, I can just imagine Claire and her circle of friends; now grown women, all curled up on a sofa, wine glasses in hand, the air filled with loud, excited chatter sprinkled with  her contagious, melodious laughter as they recount their adventures:

STORIES

CASEY:

There’s something truly special about growing up with a close friend by your side. Through awkward phases, sleepovers, first dances, impossible math classes, high school parties, and everything in between, Claire and I always had each other’s backs. When I reflect on our friendship, my heart warms at the thought of us driving down York Road, stopping for milkshakes, blasting Miley Cyrus, and laughing uncontrollably. It wasn’t the big events that mattered most, but those smaller, in-between moments that defined our friendship.

We stayed up late, laughed until we cried, stressed over classes, talked about crushes, and leaned on each other to get through every phase of adolescence. Claire was the life of every party, and she brought out the silliest, most carefree version of me in high school. Our friendship has left a lasting imprint on who I am today—encouraging me to always be myself and to find humor even in stressful situations. That’s what Claire did best.

One moment that really stands out from my Junior year was when our group of friends went through a phase of eating lunch in the middle school gym. One day, Claire and I were sitting on the floor with our sandwiches when someone casually mentioned the math test happening in the next period. This was a complete surprise to both of us. Panicking, we quickly opened our books and frantically tried to cram whatever we could.

Fast forward to the test: everyone had already finished except for Claire and me. We kept exchanging nervous glances from across the room, fully aware that we hadn’t prepared nearly enough. With just a few minutes left, Claire suddenly stood up, and I thought, Great, now it’ll just be me scrambling to finish. But instead of turning in her test, she looked right at Mrs. Adolf our teacher and blurted, “We both have no idea how to finish this test.”

I couldn’t help but burst into laughter. It caught me off guard, but more than anything, I was relieved she said something. Mrs. Adolf stood up and, with surprising patience, guided us through the last problem. Whether we passed or failed is a bit of a blur, but what stuck with me was how Claire’s quick wit and humor made the whole ordeal so much easier.

DIANA:

As much as I try, I can’t remember exactly how or why our friendship started but I do know she was one of the most positive, fun-loving people I had and will ever meet. Claire was always the first one to voice her desire to do something outside of school whether it was grabbing a smoothing, going to a concert, or having a good old fashioned high school basement party. When it came to hanging out with Claire the events were never boring. I can still remember the one time I agreed to go ‘grab a smoothie’ after school. Little did I know that wasn’t the only thing we would be doing. After stopping by Smoothie King and picking up smoothies, Claire thought it would be fun to drive through the nearby all boys high school to see if we could see any cute boys walking around. To a normal human this wouldn’t sound very exciting but to a sophomore high school girls that go to an all-girls school this activity was groundbreaking. As we approached the high school, Claire decided we needed to roll down all the windows and blast music as it would get the boys attention and it would obviously make us look super cool. Driving through the high school, hitting speed bump after speed bump, Claire yelled through her car window to the poor boys just trying to get to class. As she yelled, we all ducked down because we were all a little cowardly for any boys to actually see us, but not Claire. With her smoothie in one hand and her steering wheel in another, her confident and vibrant self-yelled at all those boys and forced them to look at her. After the minute long drive through the campus, we skirted off onto the main road giggling all the way home and obviously picking out which guy was the cutest.  Her energy and fun spirit was palpable and you couldn’t help but feel the same way when you were around her. She brought me out of my shell a lot in high school and made me feel comfortable in my own skin and that is something I will always remember and cherish about her. 

KRISTEN: 

Claire and I were going to a high school party in the middle of winter and of course, she was driving in her white Rav4. All was great for a couple of hours until the parents came home and kicked everyone out. Instead of calling it a night, Claire and I decided to “camp” in her car. There we sat, bundled up and freezing,  blasting an entire Miley Cyrus album and Les Mis while others jumped in to join the car party. It is one of my favorite memories with her!

ALLY:

The memories I have with Claire I hold onto tightly. I remember exactly where we were on York Rd when she showed me how she could drive (hands-frees) with her knees. I remember us begging her sister Hillary to buy us body glitter for parties and school dances when we couldn’t drive yet. And when we spent hours trying to figure out how to make a skirt out of duct tape for Halloween… and the fact that “costume” was supposed to be a Victoria Secret Angel.

MADISON:

I’ve never been a great runner, but Claire made cross country so much more enjoyable. Whether she stayed back with me at my slow pace or encouraged me to go faster, those two hours after school every day were always filled with laughter and great conversations. I’ll never forget one Friday  after practice we had a concert at Merriweather Post Pavilion, and I had nothing to wear. Midway through  practice Claire did the Lords work; she decided we needed to cut practice early that day, head to the mall and find me the perfect outfit to wear. She helped me look great that night!

Another personal favorite was her Christmas party.Claire  LOVED a good themed party.  Cue all of us in sweaters, stripped knee high socks and antlers in the Wagonhurst basement with boys nearly knocking down the back door to get in.

NINA:

When I think about Claire, I think about a huge smile, a hot pink outfit and blaring music. She was our fun, lighthearted and goofy friend. We would get out of school on any given Friday at Notre Dame Prep and race to the Wagonhurst home where we would plot out the rest of the night. We would get ready and blast music in Claire’s room, trying on clothes and getting “assistance”  from her older sister Hillary. Before we knew it, we had about 50 people crammed into the basement and we couldn’t have been happier. Claire was the ultimate host but was also right there with us, enjoying the party. This is one of the things I miss the most about her. The nights at her house and even days at school with Claire, she made fun! 
 
 

REFLECTIONS

DIANA: 

I spent the next years of my life always thinking of Claire. I think since her death happened when I was so young I never really learned from her story and applied what I learned from her to my life until I was a bit older. Come 2020 I was at a bit of a cross roads. I had just graduated college, was a new graduate ER nurse during the pandemic. While so much was happening at this time in my life I never really felt happy. I felt like I was missing out on something. I realized I wanted more for myself and if I wasn’t happy then why not make a change. During that moment Claire is the first person that came to my mind. I thought of her strength and her love for life and how she always just did what she wanted to do even up until the very end. Having her strength behind me I decided to make a change. I moved to Phoenix, Arizona. I knew absolutely no one there and I have no idea what was pulling me there but something in me knew that was exactly what I was supposed to do. It was beyond terrifying. Every time I felt scared or alone I went for a drive. During those drives I don’t think I’ve ever seen more coral skies in my entire life. Those coral Arizona sunsets were a hug from Claire. It’s like I could feel her with me telling me I was exactly where I was supposed to be. With her by my side I continued to travel. I went to Long Beach, California and every time I was stressed or contemplating the decision I had made I went for a walk or a drive and every time the skies were lit with coral. While I will never be able to give life back to Claire I really do believe I am living the life she would have wanted for me. Now with her behind me I feel like I can do anything I set my mind to. She is beyond inspirational to me even to this day and I don’t see that ever changing. I just know wherever life takes me next, as long as I see those coral skies I will know she is with me and I am exactly where I am supposed to be. 

MADISON:

Dear Claire, 

As I reflect on the past ten years, your impact on my life remains profound. Your kindness, laughter, and spirit taught me the true meaning of friendship and the importance of living life to the fullest. Your passion and dedication inspire me daily in my career and personal life- you are one of the people who inspired me to get into nursing to care for people. Though you’re gone, I feel your presence guiding me, reminding me to be compassionate and cherish every moment. I strive to honor your memory in all I do, knowing your influence has shaped the person I am today. I miss you dearly and carry you with me always.

With love, Madison 

KRISTEN:

One thing I’ve realized over the last ten years is that having a friend like Claire is truly one in a million. When I think back on our friendship, I can’t help but smile, quickly followed by a sense of gratitude for getting the chance to experience a once in a lifetime connection.

Over the years, I’ve met many great people and amazing friends, but I’ve never had another friend like Claire. When I say she is a one-in-a-million type of friend, I mean it. Claire would drop anything to be there for her friends and would always say “yes” to any plan before knowing the details, simply because she wanted to support them and have fun together. Wherever she went and with whomever she met, Claire exuded a love for life and an ability to find joy in every situation, all while dealing with her own battles.

She showed me what a true friend should be—someone who genuinely wanted to be there for the people she loved, spending hours listening and providing advice.  I have always strived to embody that quality because of how much it meant when she showed up for me.

These are just a few of the many traits I admire about her. While it hasn’t always come naturally to me to be spontaneous and remain optimistic, I choose every day to try to emulate her positivity, knowing Claire has undoubtedly changed my perspective on life.

Because of Claire, I will always try to say “yes” to new experiences, drop anything to support a friend, and look for fun in every situation, even when it seems impossible. I know that for the rest of my life, I will continue to share Claire’s story, telling new friends and people I meet what kind of person she was and how lucky I was to know her. I have seen firsthand how sharing Claire’s life has inspired complete strangers and saved countless others.

I feel Claire’s presence in so many things I do, whether it’s taking a drive while blasting my favorite music or going out of my way to see a friend at a coffee shop, treating myself to a pastry from the display window. Many people go their entire lives without having a friend so selfless and loyal, and I feel so blessed that I was lucky enough to have all of that with Claire.

In the last decade, I’ve found comfort in recalling the countless memories I have with Claire—replaying our conversations and sometimes even dreaming about sitting in her RAV4, catching up after all these years. In these dreams, we share updates on our lives and reminisce about high school music, boys, and parties. I always wake up feeling a sense of peace, as if I’ve just caught up with a friend who moved away, and we need to share months of news, both good and bad. I look forward to having these dreams and hope to continue experiencing them for a long time to come.

All my love

Kristen ❤️

NINA:

Claire was an amazing person and light in my life. As I wrote this, I thought about how positive she was despite everything she was dealing with at the time. Not only did we not know it, but we couldn’t even believe it when we found out. This was due to Claire’s easygoing personality and her ability to find fun.
 
Claire, you have impacted my life in ways I could not imagine. When I think back, my memories with you are fun, carefree and filled with laughter. It is remarkable to think about what you dealt with during our friendship, without me even realizing it. This happy and easy-going approach to life is definitely the most unforgettable thing about you. I would love to “Live life like Claire”, which we came up with while telling stories about you. To live life like Claire, would be to enjoy every moment, like she did. Anyone will tell you, throughout all of our memories, she was happy, fun and bubbly. It wasn’t just her personality that made her special, it was the way she celebrated life. As I reminisce, I would like to embody her beautiful spirit more into my daily life. No matter what was going on, I knew that Claire could bring a smile to my face. 

ALLY:

When I think about Claire I can still hear her voice, picture her mannerisms, her tone when she was saying something sarcastically, or the dead giveaways when she was telling a white lie. She was someone you could talk to about everything and nothing at the same time. She never got tired of talking. I remember going off to college and missing that. But most importantly, I remember how she made me feel. 

I think about her a lot. I think if she were here today we would be doing lots of traveling. I know she would have hopped on the first flight to visit me in Australia when I moved here. Claire was always up for an adventure. I think about the career she would have chosen and which city she would live in. She always had a soft spot for the south and sunny weather and she was passionate about fashion, but I could also see her living in NYC working in PR or media. It’s bittersweet to think about, but I know that wherever she would have ended up she would be doing big things. 

I think about making her proud, knowing that whatever I am facing, she would be rooting for me and telling me to go for it; even if “it”  might be a bit delusional. It’s hard to believe that she’s been gone longer than I knew her. But the impact she made on my life and the way she made me feel is something I could never forget.

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“Consider Me Well Prepared” – The Courage Behind Claire’s Smile

Ten years ago this October 16th, Claire Wagonhurst lost her life  to melanoma. She was just 17, a senior in high school, a young woman who had just excitedly learned she had been accepted to study art and design at two universities – refusing to decide until she heard from the third.  Although her mobility and sight  were fading – either due to disease or treatments – she  refused to let melanoma define nor limit her passion for life.  As we mark what her friends call her “angelversary”, we share with you Claire’s college application essay.  It offers a glimpse into the journey Claire endured in her three-year fight against melanoma and the deep pool of courage and strength from which she drew to live a joyful and inspiring life.  May it inspire you as face your own challenges. May it help you understand why at the Claire Marie Foundation, we fight so hard to make sure no other family faces this loss. May we all  #livelifelikeclaire

Consider Me Well Prepared    Claire Wagonhurst   Notre Dame Preparatory Class of 2015

The incessant beeping of the empty IV awakened me. Not that I slept much over the last few days with the raging headaches and the whispering of doctors and nurses as they scurried in and out of the sterile hospital room tending to my needs. This could not be happening again! The melanoma was finally going away. Could I not get a break? My senior summer had just begun and I had plans; a trip to Spain, job at the pool, concerts with my friends and college tours! I didn’t have any more time to lose to cancer! I wanted so badly to scream and cry but my head hurt too much for such human indulgences. The emotions could come later. I tucked them away in my racing heart and coached myself through it once more. “Come on Claire, you can get through this again. Dig deep, find the strength, hang on. “

It’s just one more storm to drive through.

That had become my mantra when the winds first started brewing my Freshman year. I bounded in our front door one October afternoon, exhausted from cross country practice to the bad news. It was written in my mother’s pained eyes and on my dad’s strong face. A mole on my ankle went nuts compliment of hormonal changes in puberty. My friends got zits. I got melanoma.

Just keep driving. The blinding and pounding rain will stop, the winds will ease.

Cancer would not define me. I didn’t want to become one of “those kids” who wear their disease like a cloak for all to see, evading all traditional teenaged experiences to hide in illness. Nope, this was merely a bump in my road; a detour perhaps, but nothing that would keep me from my goals. Following two surgeries and a year of treatment, we were celebrating! The melanoma was gone! I was a success story! Somehow through it all, I managed to stay on track with my academics and teenage pursuits; sports, friends, dances, community service and design studies. However, just as I began to relax and embrace the sunshine of my teenaged existence, the cumulus of change swirled in the distance. The confetti was barely swept away and I was still sporting my Sweet 16 Birthday Crown when I noticed my leg was swollen. Cue the winds. Brace for the rain. It was going to be another bumpy ride.

It’s only a storm. Just keep your hands on the wheel and eyes on the road. You can get through this.

In all, I weathered two more melanoma recurrences that year including surgery and multiple hospitalizations for treatment. I was rewarded with more scars and a lovely six month reprieve in which I soaked up the sunshine of partial remission. Little did I know in June, the storms would return.

Breathe deeply. Keep moving forward. You will feel the sunshine again.

This summer’s surge was the mother of all melanoma storms. It’s harshness lingers still, but the rays of full recovery are burning brightly. My success is deemed “miraculous” and thanks to a newly approved drug it should be the last melanoma storm I face. However, it certainly won’t be the last hardship I face in my life. Consider me well prepared.

Melanoma has taken its toll on my life; most notably stealing my innocence and the frivolity of youth. But as with all things in life there is a great gift that comes wrapped in pain if you look deep enough. I have the gift of family, friends and faith. I am proof that life is not fair. It’s best just to accept that fact. Most importantly, I know I have the strength, fortitude, humor and commitment to get through any challenge or storm that may blow my way. Although I must say a little more sunshine would be greatly appreciated.

Claire Marie Wagonhurst

 

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From Our “You Have GOT To Be Kidding Me!” File:

Okay people: What part of SUN DAMAGE CAUSES MELANOMA do you not understand? It seems we need to amp up our message!

In the last month there has been a number of articles revealing young people among Gen Z and Gen Alpha do not think they need sun protection and are in denial of the true melanoma risk they face from UV exposure. Even worse, they are buying into crazy false statements on Tik Tok that would be funny if not so incredibly dangerous!

An online survey of more than 1,000 people, the American Academy of Dermatology found 28 per cent of 18-26 year olds did not believe suntans could cause skin cancer. Another 37% said they would only wear sunscreen when others nagged them about it. 

A separate poll conducted by the Orlando Health Cancer Institute found 14% of adults under 35 years bought into the myth that wearing sunscreen daily does more harm to your skin than unprotected sun exposure. 

And the US Centers for Disease Control and Prevention found only 8% of men and 26% women younger than 30 say they always use sunscreen when outside in the sun for at least an hour. 

As for crazy town – here are some of the more insane Tik Tok comments made by untrained, idiotic influencers.  Let’s say this again – THEY HAVE NO IDEA WHAT THEY ARE TALKING ABOUT!

  • Sunscreen blocks vitamin D production.” ABSOLUTELY NOT!   Science proves otherwise. And, you only need 15 minutes a day in the sun to soak in all the Vitamin D you need. Bam!
  • “As long as you have a good tan you don’t need sunscreen.” WHAT??? A sun tan indicates your skin is already being damaged by the sun. Darker tones to your skin offer ABSOLUTELY NO PROTECTION.
  • “The more time you spend outside the less likely you are to get sunburned.” HELL NO! That just raises your risk! You can ONLY prevent sunburn through the use of sunscreen, the wearing of UPF 50 clothing and supplements such as Heliocare which help boost UV resistance. 

Social media platforms such as Tik Tok and Instagram are entertaining and can offer solid information from the right sources. But when it comes to your health – ignore influencers who are just trying to get clicks. They are dangerous. Listen to medical professionals – and get your skin screened every year – sooner if you see any sort of  change.

Take care of you. Take care of your skin. And Live Life Like Claire

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The Risks of Spray & Aerosol Sunscreens

Let’s face it; as essential as sunscreen is to our daily life, putting it on is an absolute pain in the #%&!!  Why not make it as easy as possible? That’s where spray or aerosol sunscreens come into play. A quick spray here; another hit there! It’s fast. It’s easy. It doesn’t get on your hands – what could be wrong with that?  Quite a bit to be honest!

First off, coverage of a spray is a fraction of a liquid sunscreen. Spray sunscreen is diluted by high levels of propellant in the canister. In short, on average, only half the bottle actually contains sunscreen! And because sprays tend to sit on the surface of the skin – if it doesn’t  blow off in the wind – the sunscreen isn’t absorbed into the epidermis; key to total protection. To actually get full SPF protection, you would need to saturate your skin and rub it in to get the full effect. Thus, you are back to the same process as liquid sunscreen. 

There are chemical risks from aerosol sunscreens as well.  The nature of the spray requires  chemical propellants such as propane, butane and hydrocarbon. Plus, unlike liquid sunscreen formulations, aerosol versions contain certain chemicals such as benzene, oxybenzone and parabens which can all be inhaled while applying.

Exploding sunscreen? Only in aerosol form! All those chemicals and alcohol can become flammable when exposed to excessive heat when stashed in your car, beach tote or sports bag. And, think twice before spraying near an open flame! Yikes!

Aerosols damage the environment! Aerosol sunscreens are not healthy for the ocean or reefs. Not only can the wind carry the chemical filled spray into the water, but it washes off your skin while swimming impacting you as well as the reef and marine life.

 

What should you do? Choose a liquid sunscreen, SPF 30 and apply liberally every two hours. Don’t like it on your hands? Then use a hand wipe to remove excess! And keep in mind there are good number of terrific sunscreens safe for our oceans. Here are just a few!  https://bit.ly/ClaireMarieFoundation

If you would like to learn more about the risks of aerosol sunscreens, just click here: https://bit.ly/3ziMi5G

Remember, take care of you. Take care of your skin, and #livelifelikeclaire

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Don’t Get Blindsided! Your Thyroid and Melanoma

It was the perfect storm. When Claire was diagnosed with cutaneous melanoma at the age of 14, it absolutely blindsided us. She wore sunscreen, never tanned and got annual skin screenings. What was missed was the risk associated with hypothyroidism; a condition that can occur as a result of puberty. Claire became fully symptomatic at the age of 14; a diagnosis coinciding with drastic and quick changes in a mole that had always been prettily sitting on her ankle. A research oncologist determined the two factors meshed to create her melanoma.  Yup. The perfect storm. With that, we first learned factors other than UV sun exposure can cause melanoma in young people and fueled what is now our mission at the Claire Marie Foundation. 

Let’s break it down further. People with hypothyroidism have unhealthy high levels of thyroid stimulation hormone or TSH. Some individuals can have moles or skin lesions with receptors to TSH. When those receptors bind with TSH,  it can result in stimulated melanoma cell development. In short, the higher the TSH level, the more “food” for melanoma growth.  Here is the research report from Dr. Julie Ellerhorst of MD Anderson Cancer Center who determined the link in Claire’s case, and other research through the National Institutes of Health https://bit.ly/46Oopighttps://bit.ly/3MjDy2K

Once we knew the catalyst in  Claire’s diagnosis, we closely monitored her TSH levels as part of her treatment plan, keeping her levels as low as possible through medication in addition to melanoma drug therapies. Every time her TSH level would start to rise, another mole would begin to change, become atypical and need to be removed. Frustrating? Absolutely.  But Claire accepted it as a manageable chronic condition. ” Everybody’s got something” she would say before running out the door. Little did we know. 

What does this mean to you? If you or a family member has hypothyroidism or have a history of melanoma, make sure you get a full body dermatoscope based skin screening – head to toe. Remember, melanoma can develop in areas of the body where the sun does not shine and can often be colorless! And of course, talk to your doctor.  Getting a reading on your thyroid is as easy as a blood test. 

Keep in mind that melanoma is more aggressive and invasive in adolescents and young adults and if related, can be further accelerated by TSH. Should anything look questionable, see your dermatologist right away.  If you follow our other articles, you will remember surges in testosterone and estrogen can also be contributing factors to the development of melanoma in young people along with genetic predisposition. Add to that the risk of UV sun damage and you can see the need for overall skin care. Don’t get blindsided. Take care of you and your skin. Remember; prevention is the cure when it comes to melanoma. #livelifelikeclaire

 

 

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A Young Melanoma Survivor’s Nightmare: Why It Often Comes Back

There is still more evidence proving the shadow of a melanoma diagnosis never really leaves a young person. The “Beast” can and does often rear its ugly head at least once more in a survivors lifetime.

Dermatologists at the University of Missouri – Kansas City School of Medicine, have just released a new study which finds patients who have survived cutaneous melanoma, especially those diagnosed in childhood, adolescent and young adulthood, are five times more likely to develop a secondary primary cancer. It is of special concern within the first year of diagnosis. 

The greatest risk is for infants; those diagnosed with melanoma before they enjoy their first  birthday cake.  The risk declines with maturity through adolescents and teens with the lowest risk among those diagnosed between the ages of 25 and 29.  However it’s important to note these survivors in young adulthood are the most susceptible to developing internal cancers.

One of the researchers, Dr. Yen Luu, M.D. says “while the incidence of primary cutaneous melanoma (CM) in children is declining and the five year survival rate is relatively high (87% – 95%), secondary cancers (SPC’s) occur in over 11% of cases, reducing overall survival outcomes.”

All this supports the need for regular follow-up, self checks and routine dermatological skin exams for melanoma survivors. At the Claire Marie Foundation we believe prevention is the cure. Educate yourself. Know your risks. Engage in sun safe practices and book annual full body skin screenings with a dermatologist. Remember, primary care physicians and pediatricians are not trained to detect melanoma and other skin cancers.  Take care of your skin. Take care of you and be aware. After all, awareness saves lives. 

You can read the full report here: https://bit.ly/45O4P4u

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Air Travel and Melanoma; Know Your Risk!

Summer is finally here and it’s time to pack the bags and take off to a new adventure!  There’s so much on our mind when it comes to airline travel these days with cancelled flights, delays or lost luggage we want to offer this reminder; don’t forget to apply sunscreen before you board!

Research in the Journal of American Medical Association https://bit.ly/3WYcbzD  found airline passengers as well as  flight crews are exposed to an extreme amount of damaging UV  while in the air.  In fact, it’s so intense the study found one hour in flight equals 20 minutes in a tanning booth. Keep in mind one visit to a tanning booth can increase your risk of developing melanoma by 75%.

The risk is not limited to those just in window seats as the rays flood the entire cabin. Obviously avoiding a window seat and or lowering the shade can help  reduce exposure but to be safe, apply sunscreen prior to your flight and reapply every two hours. Wearing UPF 50 clothing helps as well! And don’t forget the little ones! Window seats are the favorite for them! Keep the sunscreen handy and close the shade as soon as possible.

Most importantly, have a terrific trip! Stay safe! #livelifelikeclaire

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Enough Already! It Takes More Than Sunscreen to Beat Melanoma

As we wrap up melanoma awareness month this May with sunshine filled plans for the summer ahead, can we please, PLEASE stop with all the half truths and mis-information about the causes and prevention of melanoma?

Can we address how it’s NOT only due to UV exposure? How prevention requires much more than sunscreen? Can we please, PLEASE address its prevalence in adolescents and especially young adults? Can step beyond the obvious and dive into reality?

Perhaps it’s the journalist in me who believes in hard, cold facts.  Perhaps it’s my lot as a grieving, ticked-off parent and melanoma prevention advocate but I have had it!   Through social media, news coverage and advertising every May we are continually inundated with one prevention message; slather on the sunscreen and melanoma won’t find you. Actually, nothing is further from the truth! While exposure to the sun’s UVA/UVB rays is the MOST common cause of skin cancers and melanoma, it is NOT  the ONLY cause. 

Did you know genetics and hormonal changes related to hypothyroidism, pregnancy and puberty can prompt development of melanoma?  Should you draw the unlucky gene or hormonal card, all the sunscreen in the world won’t stop the beast; but routine skin screenings can. If a problematic mole is removed at the very earliest stages there is a 98% chance of surviving past five years. But as the Melanoma Research Alliance reports should the melanoma reach a higher stage and spread internally through the body, the five year survival rate drops to less than 25%

Last I checked, all humans have skin. I’d say that’s well worth 15 minutes in a paper gown.

The Skin Cancer Foundation reports skin cancer is the most common cancer worldwide. It is also one of the most treatable cancers if it is detected early.  So why is there such an orchestrated pushback against routine skin screenings in the United States whereas in countries such as Australia and New Zealand it is as routine as a dental appointment? 

Perhaps because in the U.S., melanoma is not given its due among serious cancers.

Consider recommendations from the U.S. Preventive Services Task Force which every Spring, releases a report on the effectiveness and need of skin screenings for melanoma and other skin cancers. It’s important to note, the USPSTF, according to their website, is a collection of “16 nationally recognized experts in prevention, evidence-based medicine, and primary care. Their fields of practice and expertise include behavioral health, family medicine, geriatrics, internal medicine, pediatrics, obstetrics and gynecology, and nursing.”  Note not one is a dermatologist. Not one. Additionally, physicians in primary care and these other specialties are not exposed to dermatology as part of routine medical training. Why does that matter? Because dermatologists are the only medical professionals trained in the early detection of melanoma and other skin cancers. 

Last month, the USPSTF reinforced its earlier statement from 2016 finding inconclusive evidence as to whether or not skin screenings for those “without signs or symptoms” are effective for reducing complications or death from skin cancers or melanoma in adolescents and adults. The report concluded it was a wash; screenings could work or they could not.  Without symptoms? Really? Let’s look at this a little closer. By the time those “signs or symptoms” are noticed by the naked eye of a patient, if even noticed at all, it most likely is a problem. Add to that a 3-4 month wait for an evaluation and biopsy and a patient could be looking at a full blown case of melanoma with risk of metastasis to other organs.  If the same mole is detected in a routine screening, by a dermatologist trained in dermoscopy, the changes could be detected at the very earliest stage when it is 98% treatable, long before it has spread into the body. Yes, the patient will have a biopsy scar, but most likely no additional surgeries, drug therapies or negative impact on their life.

Even more mind-blowing is that in 2022, the USPSTF found melanoma was “over-diagnosed”. Let’s think for just a moment about that statement. How is a cancer over-diagnosed? Either you’ve got it or you don’t! The argument in that report was primary care physicians found while more patients were being diagnosed with early stage melanoma through routine screenings, fewer were dying of the disease. And that’s a problem? Isn’t survival something to cheer about? Did the USPSTF apply the same argument to preventive colon cancer, breast cancer or prostate cancer screenings which are much more invasive and costly? Of course not! It supports routine screening for these cancers because without question early detection of polyps, atypical moles and tumors is essential to beating all cancers.

These statements from the USPSTF complicates an already muddled message in melanoma prevention and adds to a broken system which claims lives daily such as that of my 17 year old daughter Claire Wagonhurst.

Our Claire was a beautiful 14 year old athlete and artist just beginning high school when we noticed unusual changes to a mole. She was sun safe and had been screened six months earlier by a dermatologist, but this was something new.  Despite our urgency to have the changing mole removed we faced a three month wait with the promise that “kids don’t get melanoma”. Surprise! Yes they do! Because melanomas are more aggressive and invasive in young people, it had quickly surged to stage 3a at removal.  We were blindsided even more so when we learned Claire’s melanoma had nothing to do with the sun. 

Ultimately, Claire was diagnosed with adolescent melanoma. The short version is this; hormonal changes related to puberty caused her melanoma. The longer version; routine hormonal changes in puberty prompted the development of hypothyroidism in her body which produced excess levels of TSH hormone. Add to that she had an extreme TSH hormone receptor in a mole that had been on her ankle since birth. A research oncologist at MD Anderson found that in Claire’s case, the two components meshed to develop melanoma. Subsequently during the course of her diagnosis, every time her TSH levels became elevated, another mole would be found to be rapidly changing and need to be removed. The best preventive treatment;  routine screenings every 3 months to remove any atypical moles before melanoma could set in in addition to ongoing sun safe practices.  We just accepted it as a chronic condition of her life. Sadly, it became much, much more. 

While living a full teenaged existence, Claire waged a three year battle of surgeries, hospitalized drug therapies and recovery therapies against what turned out to be an ultimate death sentence. All her pain, anxiety and loss would have been negated had the mole simply been biopsied and removed months earlier as we requested. If the medical profession had been fully educated about melanoma in young people. If, If, If!  The system failed our darling daughter and she isn’t alone.

The Skin Cancer Foundation reports melanoma is the most common cancer in young adults under 30,  the most common cause of cancer death in young women 25-30 years and the second most common cancer in adolescents 13 to 19 years. 

Melanoma in young people is said to be at “epidemic” proportions with diagnosis up 253% in the last 40 years.  Additionally, young people do not get the more treatable basal cell or squamous cell skin cancers;  they only get the nasty, deadly variety; melanoma.

At the Claire Marie Foundation, we share awareness information, prevention education and host free skin screening events for adolescents in young adults in Maryland and South Carolina. Since 2016, we have screened 1,440 young people 13-29 years, finding 16% needed biopsy for suspicion of melanoma. In many cases, early stage melanomas were detected, zapped before further treatment was needed.  So please, do not tell me routine skin screenings do not save lives. I’ve witnessed the victories and I have suffered the loss.

So how about this? Instead of ignoring the need for screenings due to lack of access,  let’s fix our broken system.  We need general practitioners such as those in the  USPSTF to follow the lead of other nations by including dermatology in their training and become skilled in the screening process of dermascopy.  By joining dermatologists in this expertise entirely new pathways to screenings and early detection would be created. Getting a skin screening could become as easy as a visit to the dentist. Wouldn’t that be amazing?

  Remember, if you’ve got skin, you could get melanoma. Know all the facts and take every precaution. That life you save could be your own or someone you love. #livelifelikeclaire

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More Evidence of Why Melanoma Is of Special Risk to Young People

You’ve heard us share the statistics again and again; melanoma is one of the most common cancers in adolescents and young adults – or AYA’s as they are called. Now new research reinforces why early detection is more critical than ever.                                      

For any human, the key to beating melanoma is detection at the very earliest stage before it has spread. But researchers at the Keck School of Medicine at the University of Southern California determined it is especially crucial when it comes to AYA patients. When found early, adolescents and young adults have a much better chance of surviving melanoma than older adults. But when melanoma has advanced to stage IV, when it is metastatic and has spread through the body, young people have only a 20% chance of surviving melanoma; a much worse rate than adults over the age of 40.

The lead researcher on the project is Dr. Katherine Y. Wojcik. Since the majority of melanoma research is focused on those over the age of 65, Dr. Wojcik felt the need to dive into the realities of the adolescent and young adult populations. ( can we just say a huge THANK YOU for that?!) According to Wojcik, “Advanced melanoma has poor survival, particularly  in AYA’s , yet information on the contributing factors remains scarce, lacking the level of detail readily available for older adult patients”. 

An earlier study by Johns Hopkins researchers found that melanoma is more aggressive and more invasive in young people than older adults. http://bit.ly/37HGxyH

Considering both these studies, with increased rates of diagnosis, it reinforces our belief that prevention through routine skin screening, along with other prevention methods, is a much better solution.

“To improve AYA survival, early melanoma detection is critical, Dr. Wojcik says. “Greater awareness, suspicion and screening for AYA melanoma may disrupt delays in diagnosis and reduce the excess burden of mortality from stage IV melanoma in young people.” http://bit.ly/3XW25ys

We couldn’t agree more. That’s why at the Claire Marie Foundation we continue to shine a light on preventing melanoma in adolescents and young adults through awareness, education and prevention. We are especially proud of our free melanoma skin screening program which has found 16% of the nearly 1,400 young people screened by our dermatological partners, needed biopsy for suspicion of melanoma.  As we say – #preventionisthecure.

#adolescentmelanoma #youngadultmelanoma #sunsafe #skinlove #skinscreenings #cancerprevention #ayacancer #ayamelanoma

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